The Boy Who Loved Too Much Read online

  A number of other mothers commiserated, sharing similar stories. This was a topic that cropped up frequently in the Facebook group. There seemed to be no shortage of available anecdotes about the casual cruelty shown to people with Williams, or to anyone with an intellectual disability, and no end to the anger and hurt it evoked in their parents. One Williams mom complained about a woman who made a snide comment to her four-year-old when the child acted up on a shopping trip.

  “I asked her if that made her feel better, being so mean to a child with special needs,” the mom said. “Her response: ‘Yes.’ I was depressed for weeks. I still think about it.”

  Of course, any mother would have reacted viscerally to this kind of affront. It wasn’t the mother’s response in the moment that was unique to the Williams community but the extra baggage that came with it, making the hurt linger. The mother of a typical child who has a run-in with a nasty stranger can shake it off as one of those things that just happens every now and then, and might even prove to be a valuable teachable moment, offering a lesson in how to react to rudeness.

  Parents of kids with Williams can’t brush these encounters off so easily. Each incident adds to the mounting evidence that the world is an unwelcoming place for their kids. The value of a teachable moment disintegrates with the knowledge that the lesson won’t stick in the mind of someone predisposed to see people—all people—as worthy of love and trust. No amount of teachable moments will thicken their skin or strengthen their defenses. What the woman didn’t say in her Facebook post, but Gayle understood implicitly, was that this one unpleasant exchange had brought forward the fears that constantly lurked in the back of her mind. It was a stark reminder that people could be cruel, that her child was vulnerable, and that even her efforts to shame a single person into shaping up had proven utterly futile.

  Gayle hadn’t yet been able to reach this level of unspoken understanding with her friends or family. They tried to be helpful but couldn’t quite put themselves in her shoes. They didn’t understand the anxieties underlying her complaint about a rude coworker because they didn’t share them. They couldn’t relate to her enormous sense of triumph when Eli walked through a doctor’s office without hugging everyone because they didn’t see what was remarkable about it. Sharing thoughts and stories like these outside the Williams community, Gayle often drew the same uncomprehending stares Eli did when he talked about twirlies.

  She could identify with another woman who complained to the Williams group after an unsatisfying attempt to unburden herself to a close friend. The woman had been talking about her grief over the milestones she was unlikely to witness in her daughter’s lifetime—like watching her walk down the aisle on her wedding day. The friend replied, “Don’t be silly; of course you’ll see her walk down the aisle!” It was meant to be reassuring, but it came across as so flippant and dismissive, it only riled her. Of course it was possible for someone with Williams to get married, but it was a much more complicated prospect than the fairy-tale wedding she had dreamed of for her daughter. And the comment revealed that her friend was miles away from understanding her plight. As she told the Williams group, “My friends really don’t get it at all. They see my daughter as just sweet and loving and joyful. They truly have no idea what we go through on a daily basis.”

  Gayle knew the feeling.

  * * *

  LATER IN THE EVENING, AFTER Eli had eaten cake and opened presents—a Pirates of the Caribbean DVD and action figures, plus an assortment of twirlies—he invited Morgan and Kylie to watch his new DVD with him in the den. It was a rare moment of connection, occupying a narrow strip of the Venn diagram on which Eli’s interests and those of his cousins overlapped. The quality time was short-lived, though. He soon irritated the girls by insisting that they watch the DVD in Spanish. Kylie and Morgan wanted to see the movie, but they also wanted to understand it. Eli, on the other hand, usually watched movies in a halting, nonlinear way. He’d replay a favorite scene over and over, sometimes in English, sometimes in other languages—whatever the DVD settings might include: French, Spanish, German, Dutch . . . Then he’d mimic some of the foreign words and phrases, not always comprehending them, but simply enjoying the sounds. It wasn’t an uncommon habit among people with Williams, who tended to have a knack for foreign languages. But it didn’t go over well with his cousins.

  On the deck, where Gayle sat with the rest of the adults, strains of the negotiations wafted through the screen door: the girls’ high-pitched requests for English, followed by Eli’s booming, insistent refusals. Gayle was tempted to run in and referee. She even contemplated overruling Eli’s language selection so he didn’t miss out on a fleeting chance to bond with his cousins. But she forced herself to stay put. As far as teachable moments went, this one offered a helpful lesson for Eli in the way his eccentricities might alienate others. And anyway, Gayle thought, it’s the kid’s birthday party. If he wants to watch a movie in Spanish, well, let him.

  Uncle Chris chuckled at the snippets of dialogue from the den.

  “Change it back!” Morgan pleaded.

  “La Perla Negro es un barco real,” Johnny Depp insisted.

  “La Perla Negro es un barco real!” Eli repeated.

  “I wonder why he wants to watch it in Spanish?” Mimi asked. “I guess he likes to hear the different sounds.”

  “Yup, I think so,” Gayle said.

  Eli is obsessed with sounds—you know that, she thought. Even seemingly innocuous comments like this sometimes piqued her. She’d felt the same way on another occasion when Chris, watching Eli destroy a beloved craft project Gayle had made for him, asked with exasperation, “Why is he so destructive?”

  He just IS, Gayle thought then. He’s always been this way.

  She knew they were only commiserating with her, not looking for an explanation. So although the comments sometimes added to her frustration at the moment, she shrugged them off because they were well-intentioned.

  The only way someone could truly offend her was to use the R-word in front of her. She expected to come across this word occasionally; she knew that “retarded” was simply part of the American vernacular. But she didn’t expect to hear it from her friends, relatives, or coworkers—not when they knew she had a kid with an intellectual disability. Still, it slipped out from time to time, even among people who knew her well enough to know better. At another family gathering, Uncle Jim uttered it without thinking when Morgan acted up, running circles around the picnic table and pulling her sister’s hair.

  The scene was almost exactly the same then as it was at Eli’s birthday party: everyone out on the back deck, eating hot dogs on a summer afternoon. And so everyone heard when he said, “Morgan, you’re acting like a retard.” It was a record-scratch moment: conversations broke off abruptly and all eyes turned to Gayle. Her face paled but she said nothing. Eli, oblivious, reached for another spoonful of sauerkraut.

  “Mmm, this is good!” he said cheerfully. Gayle swallowed her hurt and chalked it up to a momentary lapse of judgment on her uncle’s part. She was thankful Eli didn’t know the word, or at least didn’t register the way it could apply to him. The handful of people who’d used the word around her in the past had always insisted, if confronted, that it didn’t apply.

  “I didn’t mean it that way,” they’d say. “I don’t think of him like that.”

  Eventually, Eli’s cousins tired of the battle for English-speaking pirates. Morgan retreated to the deck and crawled into her grandmother’s lap; Kylie appeared in the doorway and gave her mother a pointed look. A few minutes later they were saying their good-byes. On their way out, the girls stopped to give Eli a hug good-bye, but he was focused on the TV screen.

  Gayle and the remaining adults cleaned up the party’s aftermath. Eli was left alone in the den while Captain Jack Sparrow swaggered on the screen, trilling his r’s.

  Seven

  Elves on Earth

  For years, a framed illustration of a scene from A Midsummer Ni
ght’s Dream hung above Gayle’s desk, where she could see it every day. Drawn in wispy lines and muted watercolors by the Victorian artist Arthur Rackham, it showed Puck whispering to a fairy among gnarled tree roots in an enchanted forest, smiling and tilting his head jauntily. Gayle had been struck by how closely the elfin prankster resembled Eli, with his high cheekbones and narrow chin, jutting ears and upturned nose. Even Puck’s curly hair, disheveled by the breeze, was a ringer for Eli’s. Gayle sometimes joked that on days when Eli’s hair was curlier than normal, she knew he would be more rambunctious than usual—extra Puckish.

  She was not the first to note the resemblance. Some folklorists believe that, centuries ago, real people with Williams syndrome might have been the models for fairy-tale elves. Before the advent of modern medicine, they say, Williams syndrome would have been more easily explained by magic than by science. People with Williams must have seemed like supernatural creatures—like the elves of Germanic folktales or the merry sprite in a Shakespearean play.

  Apart from the physical similarity, elves are portrayed in folklore with undeniably Williams-like personalities. They’re cute and childlike, bubbly and benevolent. They’re often depicted as musicians and storytellers. And, unlike ogres, trolls, giants, and the like, elves love humans and are beloved by them. In the fables collected by the Grimm brothers in the 1800s, elves routinely come to the aid of people in need. In one story they make shoes for an elderly cobbler who is too tired to work; in another they free a servant girl from her masters.

  A real person with Williams syndrome likely also inspired one of Charles Dickens’s characters, according to University of Chicago pediatricians Darren Eblovi and Christopher Clardy. In 1841, 120 years before John Williams published his observations of the syndrome’s features, Dickens ascribed those features to the titular character of his novel Barnaby Rudge. Barnaby, in his late twenties, is “elfin-like in face,” cheerful and outgoing, known and loved by everyone in his London suburb. His indiscriminate trust is a catalyst for the novel’s action: ultimately he is conned into helping incite a violent riot by people he believes to be his friends.

  Barnaby resembles Eli in his affectionate nature as much as Puck does physically. When greeting his mother, Barnaby puts his arms around her neck and kisses her “a hundred times.” Like Eli, he fixates on future events and asks about them endlessly. Even the events he obsesses over—including his birthday and the associated presents—are eerily identical. In a conversation that Gayle and Eli might just as easily have had, Barnaby asks his mother, “Is today my birthday?”

  “Today!” she exclaims. “Don’t you recollect it was but a week or so ago, and that summer, autumn, and winter have to pass before it comes again?”

  Barnaby’s mother could likewise be modeled on Gayle. She treasures her relationship with her son even as she fears for his future. She rues his condition but notes that, because of it, “perhaps the comfort springs that he is ever a relying, loving child to me—never growing old or cold at heart, but needing my care and duty in his manly strength as in his cradle-time.”

  Dickens’s account of Williams syndrome is so incisive that Eblovi and Clardy offer it as evidence that medical insights aren’t strictly the purview of physicians. Because Dickens wrote the book a quarter century before Gregor Mendel’s experiments with pea plants laid the foundation for modern genetics, “he could not have proposed any molecular basis for Barnaby’s characteristics,” they write in an article for Pediatric Annals. But, they add, “this example of fiction providing a description of a disorder more detailed than that of medical journals more than a century later should encourage physicians to look to sources beyond traditional scientific articles for valuable clinical information.”

  Williams syndrome in particular may be better suited to stories than scholarly works. Even modern scientists are sometimes struck by its seeming otherworldliness.

  “I find myself not wanting to say ‘people with Williams syndrome’—I want to say ‘Williams people,’ ” Oliver Sacks once observed. “They do seem to be a people with an identity of their own, which is different . . . I don’t think you can just divide them into sort of heightened and diminished powers—to say that there are the high musical and social powers and diminished intellectual and conceptual and visual powers. This may be so, but it’s not enough. These are a different sort of people.”

  Apart from inspiring folktales, people with Williams syndrome and other intellectual disabilities are believed to have played a prominent role in the courts of medieval and Renaissance Europe, as court jesters or “fools.” Their musicality and good humor, their way with words, and their eagerness to please would have made them popular as entertainers. Although these roles were exploitative, the historian Suzannah Lipscomb points out that they were also a place of privilege that gave people with intellectual disabilities a much more visible role than they occupy in contemporary society. Throughout history, many have seen “natural fools” as exceptionally holy, closer to God in their simplicity and essential goodness. And while they might have been mocked, they were also well cared for in the royal court. Historians believe that Henry VIII’s beloved court jester Will Somers was intellectually disabled because records show that Henry paid a caretaker to look after him. Somers, a consummate punner and a gifted storyteller whose witticisms were recorded in popular books of the time, was known for a verbal dexterity that is one of the hallmarks of Williams syndrome, although of course it wouldn’t have been identified as such in the sixteenth century.

  Historically speaking, it was only relatively recently that scientists offered a biological explanation for the seeming magic of these jester-like personalities and elfin facial features. Today, many people with Williams embrace their presumed heritage as court entertainers. In 2011, a British theater troupe made up of actors with special needs, including a young woman with Williams, re-created a historical jester performance in Hampton Court Palace, where Henry VIII lived. In 2014, a seventeen-year-old South African with Williams realized his dream of performing in the country’s annual minstrel carnival, donning bright purple and gold clothing and face paint to dance and sing with the members of his favorite troupe. He was one of the only white performers at the carnival, a two-hundred-year-old tradition begun by slaves to celebrate a day off every January 2. Oblivious to the festival’s freighted history, he just loved the music.

  Gayle even knew a young man with Williams who attended clown school and regularly performed in costume and makeup at parties. He saw clowning as his calling in life. Gayle was not sure whether Eli could, or should, follow suit. At twelve, he was often funny, and loved to be the center of attention. But Gayle wasn’t sure if he’d ever have the focus or self-discipline he’d need to be a performer. And she cringed at the fear that people might laugh at him, not with him.

  After all, Williams syndrome has been the subject of less ambiguous derision over the years. The gap-toothed, grinning Mad magazine mascot, Alfred E. Neuman, first appeared on the humor magazine’s cover in 1955 with an exaggerated version of the elfin features common to Williams. Even his catchphrase, “What, me worry?” captures the apparently carefree nature of people with the disorder. A similar caricature exists in different versions on advertisements, in comics, and on postcards stretching back to the late nineteenth century, often with the same catchphrase, and sometimes captioned “the idiot kid.”

  The humor of this look evidently hasn’t worn off. Someone once sent Gayle a “Redneck Christmas” card that pictured a cartoon redneck decorating his Christmas tree with empty beer cans. His face hit a nerve, though: he had the same big gap teeth and jug ears as the Mad mascot. Before Eli was born, Gayle might not have minded getting a card like this. She might even have chuckled. But now it hit too close to home. Why would anyone send me this? Gayle thought. Are we all just supposed to laugh at funny-looking people? Caricatures like this no longer struck her as harmless. They dehumanized people with special needs—people like Eli.

 
As tickled as Gayle was by the connection between Williams syndrome and fairy-tale elves, she couldn’t think too hard about it before it, too, became troubling. Elves may be charming and lovable, but there’s one thing they aren’t: human. Read enough fairy tales, and you will find a layer of tension between elves and humans, even in this enchanted world. Elves can be fickle. Like Puck, they are prone to mischief if it strikes them as more amusing than being kind. When wronged, they are apt to seek revenge. These elfin attributes reflect our own collective fears better than they do the tendencies of the people who inspired them, of course. Real people with Williams are the least likely among us to even contemplate vengeance—or cruelty of any kind.

  There are even more sinister tales, one of which is recorded by the Grimms, of elves stealing healthy human babies and leaving deformed or disabled changelings in their place. While versions of this story could have been a way of explaining how elfin babies—or real-life children with Williams—appeared in the human realm, they also indicate a level of wariness toward these otherwise benevolent beings. Elves may be warmhearted, for the most part, but they are still outsiders. They aren’t like the rest of us. They can’t entirely be trusted.

  The problem with the suspicion shown to the elves of folktales is that it, too, has a real-world corollary. Gayle has seen people approach Eli with similar wariness. They don’t understand why he is the way he is, and this triggers the innate caution the rest of us feel when we encounter someone different. We are hesitant, skeptical. His openness closes a door in us.

  Eight

  School

  Middle school brought Eli’s differences into sharp relief. To everyone but Eli himself, his odds of achieving social acceptance looked staggeringly slim. Although he considered virtually everyone whose name he knew to be a friend, none of his schoolmates truly fit the definition. Eli himself seemed to prefer the company of adults, who tended to be more tolerant of his quirks and more willing to listen politely to a one-way conversation about floor scrubbers and vacuum cleaners.